Kickas.org Forums Treatments, Drugs and Alternatives Anti TNF and other biological medications Continue with NSAIDS or start Anti TNF??

Hi Everyone

I'm new to the board so please go easy on me if this question has already been asked.

I've been suffering from AS since I was 17 and was only diagnosed 18 months ago (34 years old). The reason I was diagnosed was my collar bone dislocated while exercising and my work insurance paid for me to see a rheumatologist. Since then along with my back and shoulder pain I've had swollen fingers, wrist, toe, knees and ankles. A couple of weeks ago I had a burst bakers cyst.

I've been taking NSAIDS daily for the last 12 months and was taking sulfazalasine. I stopped taking sulfazalasine because I was still getting peripheral swelling and it made me feel very lethargic.

My rheumatologist said he'd like to try me on Anti TNF so I was sent to see a nurse specialist as this is part of the process that must be followed on the NHS (UK). The nurse however has advised that I continue to take pain killers and NSAIDS and will see me again in 3 months

What I'd like to know is this because ANTI TNF is expensive or is it he feels I'm not ill enough and can manage on a combination of pain killers and NSAIDs. He did recommend that I don't take the NSAIDs every day and try only taking pain killers daily and NSAIDs only on real bad days. The problem is I can't go a day without taking the NSAIDs because the pain is to much.

Sorry for the long post.

Hi MikeJE,

I'm not sure how it works in the UK & hopefully someone else will come along with more knowledge on this, but here in the US the usual protocol for many insurances used to be that you had to fail on 3 different DMARDs before you moved on to biologics. I have noticed now that many people are starting the TNFs sooner without having to go through the other meds. In my own case, I went through just about every NSAID on the market & every DMARD before I got on the biologics. And even now, it takes a combination of all 3 to even remotely control my disease.

Were you taking the enteric-coated form of Sulfasalazine? It is associated with many less side effects. I am a bit surprised that the nurse suggested you take the NSAIDs as needed. I always thought they had to build up in your system over time to get the full effect, but maybe I'm wrong.

In any case, welcome to the forum & good luck in your treatment. At your 3 month check-up if the biologics aren't suggested to you, I would ask what criteria you need to meet to get on them in the UK.

I suppose what I'd like to know is all drugs have pro's and con's so is it better to continue with pain meds such as NSAIDs or go for Anti TNFs.

I'm on 60mg of Arcoxia once a day and I've heard lots of scare stories about stomach problems. Is ANTI TNF less risky?

Not sure about the Sulfasalazine but I know I feel a lot more alive now I'm not taking them.

Mike

I am in UK and have just recently started anti TNF. I had been on NSAIDs for over nearly 20 years and, until early last year, they mostly worked. However each type eventually became ineffective and I would change to another. Celebrex was best but I had to give that up due to HBP. Nothing else worked for me as I think my system was used to them. Had a really bad time. ESR and CRP were really high and Dr referred me back to the rheumatologist who thought I could be a candidate for anti TNF. First I had to be assessed by the rheumatology nurse and physio. There are strict NICE guidelines for the prescribing of anti TNF. All this was explained clearly by the nurse. All other treatments have to have failed but that would mean taking NSAIDS at their full dosage. They need to be taken regularly with painkillers as and when needed so I am surprised at the advice you were given! I was seen again after 3 months and went through the same procedure. More blood tests. Back to rheumatologist who said I met all the criteria. Stared remicade in July and it is absolutely wonderful. I didn't think it would be possible to feel so much better both physically and mentally. It is a very powerful treatment with possible serious side effects and it is because of these as well as cost that it is a last resort type treatment here. Hope this is of some help. Good luck.

Hi Mike,

First of all, this is the first time I've seen one of your posts, so welcome to KA! We're glad you found us, and I hope you find all the help and support that you need here.

Your question is a big one that many KA members have faced in recent years as the anti-TNF drugs became more commone. Currently, I am on Remicade myself, which follows about four years on Enbrel (oh, and I did take Humira for a month). I am 44 and have had AS since I was 18, and it became very severe in my mid-20s. I have complete spinal fusion and severe kyphosis (to the point where I needed a spinal osteotomy over a decade ago), have had both hips replaced, and have experienced some involvement with all of my major joints. Even with that level of damage, the anti-TNF drugs were a HUGE help to me and an absolutel lifesaver. They absolutely helped reduce my pain and inflammation levels, and without them, I would have had to take my disability leave much sooner than I eventually did (just last September).

I switched from Enbrel to Remicade about five months ago because the Enbrel finally lost its effectiveness, which some other members have experienced. However, this turned out to be a good thing, as the Remicade has been nothing short of amazing. The Enbrel made me feel better, no doubt about it, but the Remicade was darn near life-changing. I was in really rough shape when I stopped working last year, and now, one year later, I feel so much better and am in much less pain.

As you can guess, my vote would be for the anti-TNF drug. Besides the fact that they help me so much, I have other reasons for feeling strongly about this matter. First of all, long-term use of NSAIDs has been 100 percent proven to be a disaster for the human body. While they do help lessen the pain and inflammation, sometimes to a dramatic degree, the damage they cause to our stomach and intestinal tract are simply too devesating to justify their long-term use except when there is absolutely no other choice. New drugs such as Prilosec, etc. do help protect the stomach better than could be done in the past, but that does not mean that they offer 100 percent protection. In fact, the longer you stay on NSAIDs, the greater your risk of bleeding ulcers that can be life-threatening (and without any warning too). Besides those obvious health risks, the group here at KA that follows the No-Starch Diet protocol also has some compelling evidence that NSAID use actually makes AS worse not better. While not everyone agrees with that research--and I can guarantee you that your rheumatologist won't--a growing number of doctors and other scientists DO believe that, and it is pretty much certain that NSAIDs cause more damage than we even know about.

Now, all these scary things about NSAIDs are undoubtedly making you say, "That settles it, I'm asking for the anti-TNF drugs NOW!!" As I said, I personally agree with that choice, but you need to know that anti-TNF drugs certainly are not without risk of side-effects either, some of them severe. If you check the permanent posts at the top of page 1 of this Anti-TNF forum, you'll find a post that explains how anti-TNF drugs work and what risks are associated with taking them. Please note that the information in that link was first releases in 2006, and since then, more information aobut potential side effects has been issued--if you search through some of the archived posts here at KA, you'll find posts related to those new findings. Just this week, in this forum and also in the main forum, a member posted a link to a brand new FDA study concerning fungal infections and their relationg to the anti-TNF drugs that is forcing the pharmacy company to include sterner warnings about the chances of being stricken by such an infection while on Remicade. Other known risks include an increased chance of tuberculosis, and even very rare instances of lymphoma in anti-TNF patients.

Thus, there is a lot to think about when deciding which route to take. However, my personal choice was a clear one. The anti-TNF drugs have been shown to slow the disease process and greatly reduce inflammation caused by AS. The drugs have been shown to do things that NSAIDs simply cannot do, and without the serious stomach issues associated with NSAIDs. In addition, for those who have experienced positive results with the anti-TNF drugs, the reduction in pain and subsequent improved quality of life has far, far outpaced any relief they experienced on NSAIDs. Unfortunately, not everyone responds to the anti-TNF drugs. While there have been many happy posts from KA users after receiving their first anti-TNF treatments, there have also been heartbreaking posts from people who had put so much hope into the drug and expected to feel the relief others here had felt, only to find that the drug just did not work for them. Luckily, the percentage of patients for whom the drugs have not worked at all remains low (even one patient who doesn't get relief from the meds sucks, however).

In the spirit of full disclosure, I feel I should tell you that, in conjunction with my Remicade, i do also take Celebrex, which is, of course, an NSAID. However, before i started on Enbrel, I needed at least one Celebrex a day, often two. After Enbrel, and continuing with Remicade, I instead only need to take a Celebrex about once a week, sometimes twice. I know this sounds odd, as it seems unlikely that I would receive any benefit taking the Celebrex so infrequently, but I have no doubt that it does help me. After a week or so without one, I notice that I feel a bit achy and feel as if my inflammation is on the rise. So, I take one with dinner, and by the next morning, I feel much better, a feeling that lasts for about a week. I would rather not take even this single dose, and if push came to shove, I would drop it, but I keep doing it right now because it really does seem to help a lot.

One last thing: Before deciding on either drug regimen, you might want to check out the NSD Forum here at KA. There you'll find a guide to getting started on the No-Starch Diet as well as tons of recipes and thousands of posts from other KA members who follow the diet and swear by it. While there is still controversy surrounding the diet in some circles, one fact absolutely cannot be disputed: Treating ANY disease by natural means is always preferable and safer than treating it with pharmaceuticals. If you have the discipline to follow the diet, and you find that it works for you, then by all means, that should be your first choice, period. All drugs have side effects, and the drugs we are forced to deal with to treat our AS have particularly nasty ones.

Hope that helps. Good luck, and keep us posted on what you decide.

Brad

Hi Brad,

So glad you're having such good results with Remicade.
I've been on Enbrel for about a year, with mild success, but have recently switched to Humira. However, I've been getting terrible "heartburn", reflux and stomach upsets and cramps since I started it (just had my 3rd shot), and am wondering if it's just coincidence? I've been taking a double dose of Losec for several years, after being dxd with Ulcerating Reflux Oesophagitis via endoscopy, as I can't move without Naprosyn SR am and Indocid pm (would LOVE to be able to come off them!).
Can I ask why you were only on Humira for a month? I'm seeing my rheumy next week and think I'm going to have to stop taking it as well

Thanks. Take care,

Sue

Hi Brad

Thanks for your honest reply and you're right this is my first post (I've been lurking for a while). I seem to have a good rheumatologist but there's nothing like speaking to others going through the same.

I have an appointment with my rheumatologist Monday to discuss the continued use of NSAIDs. I'm really concerned because I have to take them everyday or I just can't function.

I'll take a look at the NS diet but I'm worried I'll end up with nothing to eat as a vegetarian.

Take care

Mike

Hi Sue,

Sorry to hear about the heartburn. Every since my many years of Indocin use took their toll, I've had to take Prilosec every day or I get horrible heartburn at the drop of a hat. Luckily, one Prilosec seems to control things very well.

As for my use of Humira, pretty simple reason why I ended up stopping it and going back on Enbrel--it just didn't work for me. I felt quite good after the first week, but by week three, I could tell that it was no longer doing me any good and I was really starting to hurt. After just another week or two, that was it for me. The only good part of that story is that just the one month seemed to do wonders for how I reacted to Enbrel. I went on the Humira because the Enbrel has finally seemed to be no longer working, but when I went back on it after the Humira experiment, bang, things were great once again. That lasted right up until earlier this year, when Enbrel finally stopped working again and I made the switch to Remicade.

Hope that helps,

Brad

Hi Brad,

How long were you on Enbrel the 2nd time before it quit working? I keep debating whether to stop the TNFs altogether or try going back to Enbrel after being off it & on Humira for 5 months.

The Humira helps my hands & feet more than Enbrel, but Enbrel was awesome for my spinal pain & fatigue.

Hi Janet,

I was on Enbrel for at least two years after I went back on it, maybe longer. My memory is the worst, but I am positive it was at least the 2 years. Right after the brief "vacation" on Humira, the bump I got when I went back on Enbrel was significant--it worked just about as well as it did when I first started taking it. That was a HUGE improvement over how it was working just one month earlier, as it had really become ineffective when I made the switch to Humira. After that initial burst, it leveled off and continued to work quite well until the last three months I was on it. For those three months, the Enbrel really dropped off again, leaving me feeling progressively worse over the last three months. By the end, it really was doing nothing, and I hurt as badly as I did before I started taking the biologics.

Luckily, I was one of those people for whom Remicade seemed to work almost magically the very first day I started taking it. And, if anything, it as been working even better in the months following that first infusion. My next one is scheduled for next Monday, and I am ready for it. Over the past 2 days, I have felt the achiness creeping back in, and I've had to take a celebrex for the first time in weeks. I think the infusion date might be seven weeks after my last one, which means if I had simply made my appointment the standard six weeks apart, I wouldn't even have had this minor feeling that the Remicade was wearing out. Lesson learned for next time!

Good luck with whatever decision you make.

Brad